I keep reading about Orkambi and I really, really want it made available to all those that could benefit from it, so one afternoon recently when I was feeling a bit stroppy I wrote to Mrs May.
Little Pinkie is going to be 10 this summer, so with a decade of CF Mummy-ing under my belt I have decided to mark this mile-stone with something epic.
I call it ‘my old friend’ but it isn’t, it's the opposite. I haven’t really got insomnia either, not the full blown variety anyway, I have a milder, more of the keep you awake all night until an hour or so before the alarm goes off when frankly you're having the sleep of champions, type of insomnia. It’s a curse.
In Pinkie’s early days I used to leave a list that took me a day or two to compile, I had speed dial numbers on magnets on the fridge (a posit was too frail and could easily bluster to the ground), I had Plan B, Plan C and even Plan Panic and Scream all mapped out just in case. I would leave home full of butterflies tied up with knots with Mr declaring; “We’ll be fine don’t worry.”
I’ve told Pinkie that if she didn’t have CF she’d be too perfect, she’d blow minds with her sheer brilliance and no one wants to be surrounded by people with exploding heads, think of the mess. Saying that, I am so proud of her there’s a very real danger I could pop.
“I’ve been picked for the cross country team,” beamed Pinkie a few Friday’s ago.
Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on
Lean on me by Bill Withers
I do all my best thinking when I’m out walking Puppy-Face. Even on the days when I’m too busy to consider having a wee, his little face looks at me, and my heart strings twang and before I know it I’m out strolling again. Wasn’t it the Dalai Lama who said;
“If you have time, meditate for five minutes, if you don’t have time, meditate for ten.”
I like that.
It’s been a while since my last post because frankly being a pillar of the community takes up a lot of time. I know, you’re thinking what a hero, what a kindly person to give up so much of their time, surely Cecil’s payback from the karma police must be truly magnificent — think again folks, I’ve been done, swizzled, conned, stitched up like a kipper — a kipper with a big green cough.
Pinkie is poorly.
With the very real worry that I might actually get a place in next years London Marathon hanging over me, I decided to take affirmative action.
I should point out that the picture with this post is not of my stomach, not in real life anyway. It belongs to someone who doesn't like wine and cake as much as I do.
A few Sunday’s ago I was watching the London Marathon with Pinkie and Blue. We discussed at length the great achievement it is for each participant to achieve their goal after months of training, boredom and pain.
“And they raise so much money for charity it isn’t true,” I said naively.
Pinkie’s eyes switched into those of a late 70’s Action Man, I could see the words weaving through her mind, until within a millisecond she said the words;
“Mum, you could do it for Cystic Fibrosis.”